Living with children's cancer

Living with children's cancer

For parents

Having a child diagnosed with cancer marks the beginning of a journey full of emotional, psychological, physical and practical challenges. You may also experience a range of different feelings along the way, all of which are valid and understandable.

Amidst it all, you’ll need to tell your child about their diagnosis, make decisions about treatment, and continue taking care of yourself and the rest of your family. This can feel overwhelming.

This section contains information that may help you know what to do after your child’s cancer diagnosis, along with links to further information.

Helpful tips

  • Find out as much as you can about childhood cancer, treatment and care. Doctors, nurses and other health professionals can give you lots of information and tell you where to go for more information.
  • Don't try to manage this on your own. The doctors, nurses and other staff at the hospital all want to help you. Let them know how you feel and ask for help. If you have questions, make sure you ask them. There are no silly questions.
  • Ask family and friends to help with things at home. Most people want to help, so make sure you let them know what you need. They may be able to help with things like cooking, cleaning, shopping, washing or looking after your other children.
  • Friends and family will want to know how things are going, but answering individuals can be exhausting. Set up a group email, blog or even a private Facebook group to keep people up to date. You could also ask a friend or relative to do this for you.
  • Make sure you look after your own physical and mental health. It's easy to focus all your time and energy on your sick child, but you need to be healthy so you can help them. Don't feel guilty about taking some time out for yourself.
  • Make time for your partner, other family members, particularly other children, and friends. It's important to maintain close relationships during this difficult time.
  • Talk openly with family and friends about what is happening can help. You might also want professional help from a counsellor or psychologist. Your doctor or someone at the hospital will be able to provide you with a referral.
  • Although treatments are complex and disruptive, most children will be cured. It is important to maintain their sense of a positive future by keeping them engaged with friends family and school.

 

Accepting help from family and friends

You will receive many offers of help from family and friends who care about you and want to help. Help can be hard to accept at first, but this will become easier. Accepting offers of assistance may make this time easier for you and your family.

People who offer to support may not know what to do. Let them know how they can be most helpful, such as shopping or cooking meals. Always be clear about what you need. Make sure you look after your own needs first rather than trying to please others. Some people may feel uncomfortable and may not offer or approach you, this is quite normal as we all deal with things differently.

You might find it overwhelming to repeat information for different relatives and friends. ‘Nominating’ someone close to you to update family and friends for you can help with this. You could also provide regular updates through a blog post, email or private social media groups.

View Paediatric Integrated Cancer Services' Tips for parents from parents.

 

Using hospital services and support teams

The treatment and support team at the hospital is there to help you, your child and your family. Don't be scared to ask them questions. There is no such thing as a ‘silly’ question.

Every family is different, and it's important that you let the team know about your situation, such as:

  • whether you need to travel a long way for appointments
  • whether you need accommodation or have specific needs (disability)
  • what your family and support networks are like
  • whether you need culturally or language specific information. 

Hospital staff have dealt with every kind of family situation. If you let them know your situation throughout your child's cancer journey, they can help you in the best way possible.

Ask your child’s treatment team about the hospital services available for your family, and how to access them.

The section called The treatment team has further information about the various health professionals and support people to meet the needs of your child and you.

The section called Where to find support has further information about national consumer organisations and peak community-funded organisations.

 

Talking to your child and other children about cancer

It's not easy to talk with children about cancer. You will need to decide how much to tell your child and their siblings, based on their age and maturity levels. The most important thing is to be open, positive and honest with them.

If possible, include your child in conversations about treatments. If they are old enough, they can let you know how they feel about certain treatment and care options. As they improve, talk to them about their return to normal activities, such as school, sports and social events.

It’s important to include your child’s siblings in some discussions. They will know if something is wrong, so it’s best to tell them what’s going on right from the start.1

Are you a child with cancer?

Feelings and fears

If your mum or dad or your doctor has told you that you have cancer, you might be confused. You might not be sure what this means. You might be feeling sad and scared because you know it is something pretty serious. You might also feel angry because this is happening to you. Lots of children feel this way when they find out they have cancer.

Best to talk to mum or dad or another adult you trust

When you first find out you have cancer, you probably don’t know any other children like you. You won’t be able to ask anyone what it’s like. But you can talk to your mum or dad or another adult. They can talk to you and help to explain what’s happening.

After your treatment starts, you’ll meet other children with cancer. Sometimes it helps to talk to them about how you feel.

Why did I get cancer?

You might think you got cancer because of something you did. But you didn’t. Doctors don’t know exactly why some children get cancer. But it's not because of anything you did wrong. And it’s not because of anything your parents did wrong.

Cancer isn’t ‘catching’. It’s not like a cold or the flu. Don’t be scared that other people will catch cancer. You can have as many hugs and kisses as you like.

Changes to expect

You’ll have tests and treatments for your cancer. You might have an operation. You’ll probably need some special medicines. Your life will change a lot. You’ll need to go to the doctors and hospitals a lot. Sometimes you might need to stay in hospital for a few days with your mother or father. Sometimes this might be only for a day. But you will still be able to play and have fun.

You might also look different while you're getting your medicines. Your weight might change. Your hair might fall out. 

There will be people around to help

Everyone you know and love will all be helping you. You'll also meet other children with cancer. You can talk to them about how you feel. You might even make some new friends.

Let someone know

If you start to feel really sad about your cancer, make sure you tell someone. You can tell your mum or dad, or someone else.

Some children have bad dreams about their cancer. Other children don’t like going to places that reminds them about their cancer.

If this happens to you, make sure you tell someone. Doctors can help make sure you don’t feel like this when you get better.

For brothers and sisters

This section has been written for brothers and sisters who can read. Share this information with your child’s siblings if you think it’s appropriate and might help them.

Feelings and fears

If your brother or sister has cancer, you're probably sad and worried. You love them and you want them to get better. 

It might be a bit scary seeing your brother or sister at the hospital. Your brother or sister might be upset, in pain or look or act differently. 

You might also feel lonely without your brother or sister to play with. This might make you feel guilty because you are well and want to play, and your brother or sister is sick. 

You might be jealous when they get all the attention and you feel left out.

It’s OK to feel like this. If you do, talk to your mum or dad. They will be able to tell you what's happening. You can also talk to your grandma or grandpa or aunt or uncle. You might want to talk to another adult who you trust, like your teacher or a counsellor at school. Your brother’s or sister’s hospital also has people for you to talk to.

Ask your mum or dad or another adult you trust about your brother’s or sister’s cancer. Ask what cancer is. Ask what the treatment is, and why they are in the hospital so much. Ask your mum or dad how you can help. 

You can't catch cancer

Cancer isn’t ‘catching’. You can’t catch cancer from your brother or sister. You can still give them lots of hugs and kisses. It’s not like a cold or chickenpox.

You might be scared you’ll get cancer as well, but there's no need to worry. Cancer is very rare, and it's not common for more than one child in a family to get cancer. 

It's OK not to be OK

If you're feeling sad, don’t pretend to be OK. What you're going through is very hard. It’s better if you’re honest about how you feel. Don’t tell your mum or dad that you’re OK because you don’t want to make them sad. Your mum or dad love you. They want you and your brother and sister to be OK.

Remember that other people won't know how you feel. It's not happening to them. They might not know what it's like for you. 

Your friends might not know what to say. They may be scared to ask questions or say something a bit silly. So, you need to tell your friends how you feel. Tell them what they can do to help you feel better. 

Being a transplant donor

If your brother or sister has leukaemia or some other types of cancer, your mum or dad might ask you to help. They might ask you to donate some of your stem cells for a treatment. Some people call it a bone marrow transplant, or a stem cell transplant.

Stem cells are special kinds of cells that are found in your bone marrow. This is the spongy stuff inside your bones. Stem cells can make new blood cells. 

Some kinds of cancer happen because the person's blood cells don't work the way they should. Doctors can replace the bad blood cells with new stem cells. Stem cells can help make healthy new blood cells, and this can help fight the cancer.

Your brother’s or sister’s doctor will explain everything to you. You will need to have some tests to make sure you have the right kind of cells. Your stem cells have almost exactly like your brother's or sister's stem cells. 

If your cells aren't the right kind, don't feel bad. There's nothing that you or anyone could have done about it. It’s a bit like if you have brown hair and your brother or sister has blond hair. You were just born that way.

More information

Cancer Council Australia has put together these guides to help you talk to your children about cancer:

How a child understands cancer talks about how children of different ages understand and cope with cancer. 

For young people with cancer, the Youth Cancer Services provide specialist, age-specific treatment and support.

The following resources are for siblings of children with cancer:

  • Canteen's free online books for siblings. Canteen helps young people (aged 12 to 24) cope with their cancer or cancer in their family. Through Canteen, young people can access counselling, information and other support. They can also connect with others going through the same thing. 
  • Siblings Australia has more information about being a brother or sister to someone who's sick. The website has stories from other children about how they deal with it.

Books can also help explain cancer to children. Here are a few suggestions:

For younger children

Is Cancer Contagious? by Vern Kousky

What Every Child Needs to Know About Cancer by Bradley Snyder and Marc Engelsgjerd

The Famous Hat by Kate Gaynor and Ruth Keating

Chemo to the Rescue by Mary Brent and Caitlin Knutsson

The Hare Who Lost Her Hair by Amy Leonard and Tom Paul Fox

For older children

The Stars Twinkle Brightly by Mary E Fam

For any age

The Secret C: Straight Talking About Cancer by Julie Stokes

The video Someone in my family has cancer: A video for kids and parents can be helpful in explaining cancer to siblings.

References

[1] https://www.cancercouncil.com.au/cancer-information/for-family-and-friends/talking-to-kids-about-cancer/

 

Keeping a healthy lifestyle

A healthy lifestyle is important for any person with cancer. This includes:

  • eating well
  • remaining active through play and simple exercise
  • getting enough rest and sleep
  • getting some exercise.

During cancer treatment, it is not possible for your child to manage all of these. You can talk to your child’s healthcare team about these issues when you need to.

The Paediatric Integrated Cancer Service has really good information about many of these everyday issues, including about:

  • eating
  • mouth and dental care
  • exercise
  • fatigue and sleep
  • dealing with other illnesses
  • immunisation
  • pets
  • being sun smart when going out in the sun 
  • being smart on social media.

 

Helping your child to lead a normal and happy life

After learning of your child’s cancer diagnosis, you might wonder how your child’s life will change. It will certainly be different, but you will play the most important role in helping them enjoy life during cancer treatment.

Children live in the ‘here and now’ and will want to play and participate in activities as usual. This makes them incredibly resilient during a serious illness.

To support this resilience:

  • understand your child's specific needs, as these change during treatment
  • stick to normal routines and set your usual boundaries
  • provide comfort and make them feel secure and optimistic. 

Try to help your child to live a normal and as happy a life as possible during their cancer treatment. When they feel well enough, encourage them to do their normal activities, including going to school or day care. This means that they don’t miss out on as much school. They also spend time with their friends, which does help make them feel like life is more normal.

You might worry that going to school and playing with other children is too risky for your child. You might think they are better off staying in hospital or at home. Your child’s oncologist will tell you when they should avoid certain activities, and what to look out for, such as risk factors and signs of an infection. This will help make sure your child can safely take part in activities with other children. Your treatment team will also let you know how you can help your child stay healthy. You should also pass this information on to your child’s teachers and carers, as it is important to keep them informed along the way.

Many hospitals provide age-specific education for teachers and carers. Most paediatric treatment centres also have an educational psychologist, counsellor or school liaison officer who can talk to your child’s school, so they can better understand what your child is going through and how they can best support them.

 

Looking after your other children 

Having a brother or sister with cancer can be a frightening experience for your other children. They might feel a range of emotions similar to your own. However, they may not express those feelings in the same way. The way they respond to these emotions will depend on their age and maturity level. 

Brothers and sisters might miss playing with their sibling. They might worry about you because they can see you are upset. Focusing on your child with cancer may also leave your other children feeling excluded and left out, even jealous. This is especially true during the early stages when you have to spend a lot of time at hospital or going to appointments. Siblings might resent their life being disrupted. They might feel guilty because they’re well when their sibling is sick. Or, they might feel guilty about just having these kinds of negative feelings. (See Talking to your child and children about cancer.)

These feelings can be very confusing for your child's siblings. You might see some behavioural changes, such as:

  • fighting with friends, family and teachers
  • performing less well at school
  • less motivated and engaged in family life and activities
  • disruptive behavioural changes. 

Talk to your other children and give them as much information as possible. Include them in family discussions and decisions and maintain their normal activities and routines as much as possible.
It's also important to tell the school what is happening so that they know that the sibling is going through a hard time. It's important to explain this because not all teachers will be aware of what is happening and may not have any experience with cancer.

Tips for looking after your other children

  • Reassure your other children that they are loved – remember, this can be expressed in many ways.
  • Make sure you spend time talking with your other children about how they feel. Tell them what they can do to help, but don't expect too much from them during this stressful time.
  • Talk to your other children about their sick sibling. This will help them understand what's happening and help them worry less.
  • Include siblings in hospital visits, but don't force them to go if they don't want to. Ask someone to look after them while you visit the hospital.
  • Find opportunities to spent time or participate in activities with siblings by themselves.

 

Making decisions about treatment

Once you find out your child has cancer, you will need to make decisions about their treatment. Your doctor will help you do this by explaining the treatment options and answering your questions.

The type of treatment your child will receive for their cancer will depend on a number of things including the type of cancer they have. Other factors such as location, extent and laboratory test results will also be taken into account.

You will have to give informed consent about which treatments your child will get. This means that your doctor will tell you about:

  • the possible treatments for your child
  • chances of success
  • risks and side effects. 

Based on the doctor’s recommendations you then decide which treatment option.

If your child is old enough, it’s a good idea to explain the therapy to them. It is important to give them the opportunity to have a say in which treatments they receive.
 
Also see How is cancer treated?

 

Working through the family's emotions

Finding out your child has cancer might mean you feel shocked, numb and in disbelief. You may also feel angry, sad, guilty, afraid or in denial. All these feelings, or combinations of feelings are normal.

The news can be very difficult to come to terms with, and you may be struggling to understand what the future holds for your child. You may also be concerned about how this will affect the rest of your family. 

The decisions ahead of you may seem very frightening and overwhelming. You might wonder if you’re capable of making the decisions required. Feeling this way is normal.

It will take time to understand all the information. You will not need to decide on every aspect of care at once. Taking things one step at a time is the best approach.

Focus on what needs to be done

Overcoming your initial reactions can be easier by focusing on what you need to do to help support your child and family. You are the best person to judge how you child will handle and adjust to demanding and stressful situations, including:

  • how they cope in unfamiliar situations
  • what makes them afraid, sad and happy
  • how to help them relax during stressful moments. 

You can help your child cope with the treatments by remaining calm, present and reassuring.

Your child's feelings and fears

It’s important to allow your child to feel afraid and to grieve. They need to feel that they can talk to you about what they’re going through. Being honest with each other about fears and feelings can help your family’s wellbeing and ability to cope.

There's no right or wrong way to feel

It’s important to understand there is no right or wrong way to feel. Most parents find that their emotions go up and down during their child’s treatment. Some days you might feel you are coping. Other days you might feel completely lost or out of control. It is an ‘emotional roller-coaster’. 

It’s important to admit you’re feeling like this to those around you, including:

  • your family
  • other supporters 
  • your child’s treatment team. 

How you feel will match the stages of your child’s cancer journey. This includes diagnosis, before treatment starts, during treatment and after treatment.

Caring for mental health

Each child responds to their situation differently, depending on their age and maturity level. Some children cope with cancer treatment better than others. However, for some children and family members, the stress induced depression may affect their mental health. Signs of depression include:

  • feeling empty, worthless, unloved or questioning the value/purpose of life
  • feeling nervous, restless or irritable
  • changes in appetite
  • low energy
  • sleep problems
  • less interest in activities
  • more crying.

If your child or a member of the family has these symptoms, make sure you speak to your doctor, so that they can refer you to services that can help. 

More information

The Paediatric Integrated Cancer Service has more information on how you might feel, and the key tasks at each stage in your child's diagnosis and treatment.

 

Missing school

Your child might have to miss some school time during their treatment or if they are unwell.

Your child will miss out on their studies as well as social aspects of being at school. They are likely to miss their school friends, playtimes and participating in communal activities such as sports, presentations and concerts. If possible, arranging visits from friends, classmates or teachers can be helpful for your child.

There are lots of other ways for your child to stay connected with school. Some options can include video conferencing tools to participate in classroom lessons, sending work to the student at home, inviting school friends to email or send them letters and keeping them in the loop through school newsletters and handouts. Talk to the school about what they can do. You can also visit the Missing School or Ronald McDonald House Charities websites for tips. You can also get in touch with the Ronald McDonald Learning Program and Redkite for some extra help.

Some children feel excited about returning to school, while others feel upset or anxious. These are all normal reactions. Going back to school can be a challenge, a relief or both. 

Parents may worry that school might be overwhelming for their child. They worry their child will get infections, become overly tired, or be teased for being different.

If your child misses a lot of school, this may affect their long-term education. Even if your child does miss out on academic lessons at school, it does not mean they will miss out on other important parts of learning. Supports are available through cancer centres and schools to assist parents to maintain social and academic learning. They will also learn from the other adults who are caring for them. 

It is important to monitor and support the educational lives of other children within the family as these may similarly be disrupted or impaired.

When your child is ready to go back to school, communicate early with the school to ask what resources and tools will help plan for school re-entry, and how to develop an education plan. This is best done with the treatment team. Some children may need some extra help in catching up on school. 

Some children may not want to go back to school.  Ask your child about what is troubling them. You can also talk with the teachers and school counsellor about your child's feelings. They may also have some ideas about what can help, such as staggered return to school (1-2 days, or half days). Give your child opportunities to choose what will work for them – giving them a sense of control even in small ways that can help their adjustment and willingness to return to school.

Tips for helping your child go back to school

  • Talk to the school about ways the staff and students can stay in touch with your child while they're away. Also find out how your child's schoolwork can be accessed when they're well enough again.
  • When your child is ready to go back to school, encourage teachers and classmates to treat your child just like they did before. Identify and highlight any special needs your child might have, such as tiredness and risk of infection.
  • Make sure the other students know how your child might look and feel when they go back to school. Let other students know what they can do to help your child fit back into school life.
  • Make sure you talk to your child about how they feel about missing school or going back to school. Always support and encourage them.